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Intracranial Cysts: My Five Year Old Had to Have Neurosurgery

My son had an intracranial cyst (arachnoid cyst) that was growing and putting pressure on his brain. He was only five years old at the time. This is my experience as his mother, the symptoms I noticed, the surgery, and the recovery process.

What is an Intracranial Cyst? In simple terms, it’s a fluid filled sac beneath the skull. You can read more about intracranial at The National Institute of Neurological Disorders and Stroke, if you’d like a scientific definition. If it grows, there isn’t enough room for the brain. A myriad of problems can ensue as a result. Whatever area in the brain that the pressure is being built up, your child will begin to experience issues. Often, many people have these intracranial cysts and never know it. Most do not grow, but when one does you will have to have treatment of some kind by a neurologist.

Symptoms: I had no idea that anything was wrong with my son. When he was five he started sleeping more than normal. He slept through recess at school and to be honest, I wasn’t greatly concerned. He has a bedtime of 8 p.m. and I thought he just needed to nap. Some kids do. There is a full list of symptoms at rarediseases.org. Many of these cysts never cause symptoms. It generally depends on where the cyst is located, it’s size, and if it is growing. After my son started sleeping more I began to notice other symptoms.

The next symptom I noticed were headaches. Combined with the sleeping, it became really worrisome but doctors visits showed no abnormalities.

The last symptom before we were sent to Children’s Hospital, was with his vision. He asked me, “Mommy, why are there two of you?” I took him to the eye doctor, who dilated his eyes and saw the cyst pressing on his optic nerve. We were immediately sent to Children’s Hospital.

The Surgery: His surgeon was ranked one of the top children’s neurosurgeon’s in the country. He was featured on the Discovery Channel and basically known for fixing other surgeons mistakes. He had a great bedside manner, explained things so that I could understand them, and didn’t lie to me about the risks.

Waiting for the surgery is one of the hardest things to go through. You feel like the world stops spinning until you know your child is okay. When the day for surgery came, Children’s Hospital was wonderful. I didn’t cry in front of my son and walked with him until they made me let go. I burst into tears the second he was out of sight and didn’t stop until he was out of surgery, but I stayed strong for him so that he wasn’t afraid too.

They give the kids an amnesiac so they won’t remember going into surgery. Kidshealth.org is a great website to find information on surgery for children. My son told on himself about a fib he told in kindergarten. It was really sweet and adorable. He said, “I told a fib. I told the other boys that I had big boy teeth because I didn’t want them to think I’m a baby.” The medicine does make them feel funny.

The surgery took hours and the scar extended from the top of his head to the top of his ear. His eye swelled shut and his face became puffy. The scar looked pretty bad at first and his little head was shaved on one side. When they took the bandages off, his face fell and this broke my heart, he said, “Will you put my bandage back on?” He thought it would look like that forever. It won’t! You can’t even see the scar anymore under his hair. If you didn’t know he had the surgery, you would never know.

Recovery: Recovery can take awhile after something like this. John Hopkins states that recovery times can vary from person to person, depending on the type of surgery done. Your child most likely has a plate in their head and hurts, although children heal much faster than adults. His kindergarten teacher actually came to our house two days a week to help him keep up his work. He wasn’t allowed to do any contact sports, jump on the trampoline, or anything that could cause harm if he fell for two years after surgery. Now he plays football and does anything he wants to do. Just hang in there after the surgery. It’s hard to make a little one understand why they can’t play on the monkey bars, but it’s for the best.